National Brain Tumor Society

National Brain Tumor Society (NBTS) is a United States nonprofit organization focused on the brain tumor and brain cancer community. It supports people living with benign and malignant brain tumors, survivors, caregivers, and bereaved families while also working to accelerate scientific discovery and improve the policy environment surrounding diagnosis, treatment, clinical research, and supportive care. The organization describes its mission as investing in, mobilizing, and uniting the brain tumor community to discover cures, deliver effective treatments, and advocate for patients and care partners. NBTS operates across several connected areas. Its research program emphasizes translational and clinical work intended to move findings from laboratories into treatments. Funding priorities include precision medicine, immunotherapy, tumor metabolism, DNA-damage-response networks, innovative clinical-trial design, and quality-of-life research. The organization has highlighted work involving glioblastoma, oligodendroglioma, astrocytoma, meningioma, medulloblastoma, atypical teratoid/rhabdoid tumor, diffuse midline glioma, diffuse intrinsic pontine glioma, and ependymoma. It also convenes researchers, clinicians, government agencies, life-science companies, investors, patients, and advocates through its Research Roundtable program, which addresses barriers such as trial enrollment, imaging endpoints, response criteria, and the use of external controls in pediatric studies. NBTS has reported directing more than $40 million toward brain tumor research. Its cited scientific contributions include support for research associated with IDH-mutant gliomas and the 1p/19q co-deletion, participation in the development of GBM AGILE, and coordination of standardized brain-tumor imaging guidance. In addition to grantmaking, its Brain Tumor Investment Fund is a separate venture-philanthropy vehicle that invests donor-supported capital in biotechnology, pharmaceutical, and medical-device companies developing potential brain tumor therapies or technologies. Patient-facing work includes personalized support and navigation, educational resources, information about standard-of-care treatment and clinical trials, and virtual peer-support groups. The organization offers separate forums for general brain tumor support, caregivers, and grief. Its MyTumorID initiative promotes biomarker testing and clinical-trial awareness, explaining how molecular information can influence diagnosis, treatment planning, and trial eligibility. Advocacy is another central part of the NBTS identity. The organization maintains a nationwide advocate network and works on federal research funding, health-care access, affordability, disparities, clinical-trial access, and patient protections. Its annual Head to the Hill event brings patients, caregivers, researchers, and clinicians to Washington, D.C., to meet with legislators. Other activities include the virtual Advocate from Your State program, action alerts, research-advocate training, and support for the bipartisan BRAIN Act. NBTS has also participated in efforts connected with the 21st Century Cures Act, the Childhood Cancer STAR Act, the National Cancer Institute's Glioblastoma Therapeutics Network, and federal support for pediatric and adult brain-cancer research. The organization remains active as a national advocacy and support institution rather than a commercial product brand.

National Brain Tumor Society developed as a national nonprofit response to the medical, social, and policy challenges faced by people with brain tumors. Over more than three decades, it evolved from an advocacy and support organization into a broad platform connecting patients and families with researchers, clinicians, government institutions, biotechnology companies, pharmaceutical companies, and other advocacy groups. Research has remained a defining part of its development. NBTS has funded scientific work intended to produce clinically useful discoveries rather than remain confined to basic research. Its programs have supported investigations into tumor biology, molecular classification, treatment resistance, immunotherapy, metabolism, clinical-trial methods, and quality of life. The organization has associated its research support with discoveries involving the 1p/19q co-deletion and IDH-mutant gliomas, as well as with the creation of GBM AGILE, an adaptive platform trial for glioblastoma. It has also coordinated work toward standardized brain-tumor imaging protocols. In later years, its research strategy increasingly emphasized partnerships capable of moving promising findings through the development pipeline. Beginning in 2011, NBTS intensified its federal policy program. Its advocacy has focused on National Institutes of Health and National Cancer Institute investment, Department of Defense research programs, clinical-trial access, health-care affordability, insurance-network adequacy, and protections for patients and care partners. The group has maintained a large volunteer network and provides training, action alerts, and opportunities for patients to participate in research advocacy. Its annual Head to the Hill event became a visible mechanism for bringing personal experiences directly to members of Congress, while Advocate from Your State extended that work through virtual meetings. The organization has participated in several legislative and institutional initiatives. It advocated for the 21st Century Cures Act and the Childhood Cancer STAR Act, including the latter's later reauthorization. It worked to restore pediatric brain tumors as an eligible topic in the Department of Defense Peer-Reviewed Cancer Research Program and supported patient-advocate participation in grant review. In 2021, NBTS advocacy contributed to the launch of the National Cancer Institute's Glioblastoma Therapeutics Network. It also supported Project HOPE and Project GBM CARE, collaborative efforts addressing molecular heterogeneity in high-grade gliomas. NBTS broadened its patient-centered work through navigation, educational materials, peer groups, and campaigns addressing biomarker testing. In 2020 it helped launch the Brain Tumor Patients' Bill of Rights with the International Brain Tumor Alliance and supported a separate Glioblastoma Bill of Rights effort. In 2022 it advocated for continued Medicare participation by the manufacturer of lomustine, a treatment used in glioblastoma care. The organization has also increasingly addressed disparities, affordability, network adequacy, and access to trials. Its contemporary model combines four mutually reinforcing functions: funding and coordinating research, helping patients and caregivers navigate illness, mobilizing public support and legislative action, and convening stakeholders who can remove scientific and clinical bottlenecks. The Brain Tumor Investment Fund adds a venture-philanthropy component by investing donor-supported capital in companies developing medical devices and potential vaccine, cellular, gene, or other therapeutic technologies. NBTS therefore operates as a national community institution rather than as a conventional consumer brand.

• 2025

  BRAIN Act and access priorities highlighted

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS's public-policy agenda emphasized the BRAIN Act, research funding, affordability, disparities, awareness, and clinical-trial access.

• 2024

  Patient navigation activity increases

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS reported substantial growth in interactions with its personalized support and navigation service.

• 2022

  Advocacy for Medicare access to lomustine

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS advocated for the return of the glioblastoma drug lomustine to the U.S. Medicare program after its manufacturer withdrew it in 2021.

• 2021

  Glioblastoma Therapeutics Network advocacy

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS advocacy helped support the National Cancer Institute's creation of a coordinated consortium intended to speed glioblastoma drug development.

• 2020

  Brain Tumor Patients' Bill of Rights launched

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS and the International Brain Tumor Alliance collaborated on a patient-rights framework describing priorities for people affected by brain tumors.

• 2018

  Childhood Cancer STAR Act becomes law

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS supported passage of the Childhood Cancer STAR Act, later reauthorized to extend its provisions through fiscal year 2028.

• 2017

  Research Roundtable program advances cross-sector coordination

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS research workshops began addressing clinical-trial design, imaging endpoints, pediatric external controls, and other obstacles in neuro-oncology.

• 2016

  Pediatric brain tumors restored to a Department of Defense research program

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS advocacy helped reinstate pediatric brain tumors as an eligible topic in the Peer-Reviewed Cancer Research Program after their removal the prior year.

• 2016

  Support for the 21st Century Cures Act

  [2]National Brain Tumor Society official websitebraintumor.org

  The organization advocated for legislation that included regulatory and biomedical-research provisions relevant to patients with serious diseases.

• 2011

  Federal advocacy becomes a central priority

  [2]National Brain Tumor Society official websitebraintumor.org

  NBTS began emphasizing federal research investment, health-care access, delivery of care, and reduction of disparities in its national advocacy work.

A national, patient-centered nonprofit that combines brain tumor research funding, scientific coordination, advocacy, and practical support for patients and care partners.

• Patient support service

  Personalized Support and Navigation

  A one-to-one information and navigation service connecting patients, survivors, caregivers, and families with trained support staff. The service provides general information about tumor types, treatment standards, clinical trials, support groups, and treatment centers, while helping users identify additional resources relevant to diagnosis, treatment, survivorship, or end-of-life care.

• Education and awareness campaign

  MyTumorID

  An initiative promoting understanding of biomarker testing and clinical-trial opportunities. Its educational materials, webinars, and clinician discussion guides explain how molecular information may affect tumor classification, treatment planning, and eligibility for research studies.

• Venture philanthropy

  Brain Tumor Investment Fund

  A separate venture-philanthropy subsidiary that invests donor-supported capital in biotechnology, pharmaceutical, and medical-device companies developing technologies for people with brain tumors. The portfolio has included companies working on vaccine, cellular, gene-therapy, and device approaches.

• Research collaboration program · 2017

  Research Roundtable

  A convening platform bringing together government, academic, industry, clinical, patient, and advocacy stakeholders. Workshops focus on practical barriers to progress, including trial enrollment, imaging endpoints, response assessment, pediatric trial methods, and regulatory or clinical-development challenges.

• Advocacy event

  Head to the Hill

  NBTS's annual Washington, D.C., advocacy event, held during Brain Tumor Awareness Month. Patients, caregivers, researchers, clinicians, and volunteers meet congressional offices to communicate community priorities and seek support for research and patient-centered policy.

• 2024Advocate from Your State

  United States

  A virtual fall advocacy program enabling volunteers to meet congressional offices without traveling to Washington.

  Outcome. NBTS reported approximately 200 congressional meetings involving 195 advocates in 2024.

  Source
• MyTumorID

  United States

  Promotes biomarker testing and awareness of clinical-trial opportunities among patients, caregivers, providers, and payors.

  Outcome. Provides educational materials, webinars, and discussion tools intended to improve understanding of tumor biology and treatment choices.

  Source
• Head to the Hill

  United States

  Annual in-person advocacy mobilization in Washington, D.C., during Brain Tumor Awareness Month.

  Outcome. Creates direct constituent contact with Congress around research funding, access to care, and brain tumor legislation.

  Source

• 2025

  Prioritize the BRAIN Act and patient-access measuresStrategy

  Background

  NBTS identified continuing gaps in brain tumor research investment, health-care affordability, clinical-trial access, and recognition of the community's distinct needs.

  Action taken

  The 2025 public-policy agenda emphasized the BRAIN Act, federal research funding, disparity reduction, affordability, awareness, and trial access.

  Aftermath

  These priorities became the framework for the organization's 2025 federal advocacy activity.

  Source

• 2022

  Advocate for Medicare access to lomustineOther

  Background

  The manufacturer of lomustine withdrew the drug from the U.S. Medicare program in 2021, raising concern about access to a standard treatment option for some glioblastoma patients.

  Action taken

  NBTS advocated for the manufacturer to rejoin Medicare.

  Aftermath

  The manufacturer returned to the Medicare program, preserving access for eligible patients.

  Source

• 2021

  Advocate for a coordinated glioblastoma drug-development networkStrategy

  Background

  Glioblastoma drug development faced scientific complexity, fragmented research activity, and difficulty translating discoveries into effective therapies.

  Action taken

  NBTS led advocacy supporting the creation of the National Cancer Institute's Glioblastoma Therapeutics Network.

  Aftermath

  The network was launched as a national collaborative effort to accelerate glioblastoma therapeutics research.

  Source

• 2025

  NBTS emphasizes the BRAIN Act in its 2025 public-policy agenda[2]National Brain Tumor Society official websitebraintumor.org

  Regulation · Other

  The organization's agenda called for stronger brain tumor research investment, reduced health disparities, more affordable care, greater awareness of patient needs, and improved access to clinical trials, with the BRAIN Act as a central legislative priority.

• 2025

  Head to the Hill mobilizes brain tumor advocates in Washington[2]National Brain Tumor Society official websitebraintumor.org

  Campaign · Other

  NBTS reported that more than 340 advocates from 42 states participated in its annual congressional advocacy event and made more than 4,500 legislative contacts.

• 2024

  NBTS expands patient support and navigation activity[2]National Brain Tumor Society official websitebraintumor.org

  Other

  The organization reported a 72 percent increase in interactions through its personalized support and navigation service during 2024.

• 2024

  Advocate from Your State supports federal brain tumor policy outreach[2]National Brain Tumor Society official websitebraintumor.org

  Campaign · Other

  NBTS reported that 195 advocates held approximately 200 meetings with congressional offices through its virtual state-based advocacy program.

1. 1National Brain Tumor Societyen.wikipedia.org
2. 2National Brain Tumor Society official websitebraintumor.org